How I Found My Voice as an Advocate for Treacher Collins Syndrome

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I wasn’t born an advocate for Treacher Collins syndrome (TCS), and if anyone had asked me what I wanted to be when I grew up (which few people did), it would have been the last thing to cross my mind. Like others with disabilities, I was just trying to survive and lead a normal life by pursuing my educational studies and working full time.

Later, I advocated for my friends and family because I had a law background and they didn’t. I did legal paperwork, helped get financial aid for students and wrote any number of letters to help any number of people. Yet I still didn’t consider myself an advocate, especially since a lot of what I did was an attempt to buy friendships.

Someone told me recently that she could not connect with others who had Treacher Collins. I think I might have been the same way when I was younger. I didn’t want to be in the Treacher Collins world. I wanted to be in the “normal” one. Unfortunately, the people in that world, most of them anyway, were the ones who judged. They couldn’t understand our differences; and in all honesty, we couldn’t fully relate to them either.

This year, I met two people older than I who have established careers and who are comfortable with who they are. They don’t care if other people are looking at them, and they made me question why I still do sometimes. Although our stories are different, they inspired me. About the same time I met them, I started posting articles and videos on social media. Immediately I heard from hundreds of people saying that I am an inspiration to them. Now, I get it. Advocacy is about awareness. It’s the bigger picture. It’s about relating to others in more ways than one.

There weren’t any books on craniofacial differences when I was growing up. I had no advocates. Thus, I was essentially alone in a sad, depressing world. I wanted to be part of so many things, and I couldn’t. Getting picked last for baseball or group projects in art, history, or drama is a horrible feeling. It happened to me all the time, and I hated it. When I advocate for Treacher Collins, I’m doing it for everyone who has ever suffered those feelings of inadequacy and exclusion. And I’m doing it for me.

Yes, I’m afraid sometimes. And no, I can’t always separate myself from the criticism I receive. When you’ve experienced ridicule, the last thing you want to do is speak out publicly and leave yourself vulnerable to criticism. Still, I feel I have a voice that stems from my experience, and I am committed to making it heard.

No one “kind of” has Treacher Collins — just as no one “kind of” gets bullied, “kind of” gets discriminated against, or “kind of” suffers from insecurities and depression as a result of all those. No one is “kind of” an outcast.

I’m advocating for the person who maybe only has the distinctive eye shape. I’m advocating for the young person facing his or her 30th surgery. I’m advocating for the people who, like me, have to function simultaneously between a sound and silent world.

I’m advocating for myself, and I’m advocating for you.

Lead photo source: Thinkstock Images

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When I Auditioned for 'America's Next Top Model'

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When Nyle DiMarco was named “America’s Next Top Model” in the show’s season finale in December, he was the first deaf contestant to win a $100,000 contract. While the hit show was scheduled for cancellation, this particular win ignited a national response and reaction to his success, and now the show will continue. There is no mistaking the fact that the fashion industry tends to disregard diversity. 

As I watched DiMarco’s recent victory, I remembered back to 2009, as I stood with a group of other women getting ready to audition for ANTM. My friends couldn’t believe I went through with it considering I was born with Treacher Collins syndrome, a craniofacial disorder. Many of us born with Treacher Collins look at our faces and see a puzzle full of pieces that will never fit. We see a disaster. We see a miserable childhood full of bullying and a life of insecurity and anger. We’re tormented at school, ignored by the opposite sex and we usually resort to various facial surgeries to repair what doesn’t work (such as physical appearance, hearing and speech) and to make ourselves look more like the people we want to fit in with. When I auditioned for that show, I had already been through more than 10 cosmetic surgeries, and my friends told me I was pretty. But was I pretty by the standards of “normal?” As I approached that large auditorium in Los Angeles, wearing four-inch heels and a black cocktail dress, I signed in and joined the other women. 

split screen of Cynthia Murphy, on the left with makeup and on the right without

I tried making small talk, but nobody looked at nor spoke to me. Some snickered. I felt alone and stupid for being there, but I was determined to go through with the process. Finally, my group was called. We all stood against the wall, and judges walked up to us and took notes as we turned from side to side. Finally, they called the numbers of the ones who would go onto the next stage. My number wasn’t one of them. Although I lied to others about how far I made it in the process, I couldn’t lie to myself. 

Now, as I watched a deaf male win, I realized he was picked, not by judges, but by the power of the people through social media, similar to the way the winners of “American Idol” are selected. I take this as positive for those of us who don’t fit the stereotype of attractive. When the people vote for what is beautiful, perhaps they will see something that fashion-industry professional judges miss. 

Society today is seeking inspiration as a result of difference, and even though many of us are different, that doesn’t make us incapable of pursuing the same career goals as anyone else. There is a desire and need for diversity and more inclusive beauty standards in the fashion industry. If the definition of an authentic role model stems from all-inclusiveness, then why isn’t the industry setting an example to be all-inclusive? Why would I subscribe to a magazine full of models who are deemed the true definition of beauty, when I can never aspire to be in in that category? 

We live in a world of difference, a world that so far, has not often been represented in the modeling and entertainment industries. This prejudice carries over to the professional world, where people with facial disorders want to be accepted and looked at based on our own merits. 

Although I dropped out of high school, I was fortunate enough to work for one of the largest law firms in the state. The first attorney I worked for encouraged me to return to school, and I earned my associate’s and then my bachelor’s degree and graduated with honors. I have nearly completed my master’s and am studying for the Law School Admissions Test (LSAT). For the past nine years, I have been married to a good man who sees and loves the real me. 

No, I won’t be auditioning for ANTM soon, but I hope that someone — many someones— with craniofacial disorders will be. I hope the perception of beauty transcends the limitations of the past and becomes more inclusive. I remember how the other contestants derided DiMarco because of his deafness, because he lived in a world of silence and was different, because, as they said, he would never fit into the high-stakes world he so aspired to join. With tears in my eyes, I heard his name called and watched his face light up in disbelief and overwhelming happiness when the American Sign Language interpreter translated the announcement of his win. 

What is beauty? Here’s what I think. I think the perception of beauty changes. It always has, and it always will. Beauty is not only what is on the outside; it’s the inside that radiates on that outside. It’s a lot of people who never before had a chance. It is all of us who keep saying, “Here we are. Look at us.” 

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Letter to My Son Before His 11th Surgery

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My son was born Treacher Collins syndrome, a genetic craniofacial syndrome he got from his birth mom. Yes, he is adopted; both of my kids are. He was born with no palate in his mouth, no ear canals, profound hearing loss and a complicated airway. We took custody of him eight days after he was born. His first major surgery was his trach at 3 weeks old, and it was then I started telling him that I wished I was a fairy Godmother and could pull my magic wand out of thin air to make everything OK, but I couldn’t find it.

He’s about to have his 11th surgery/procedure at almost 2 and a half years old, and we don’t know what it’s going to be for until the ear, nose and throat specialist (ENT) gets in there. It could be routine; it could be a few nights in the hospital. But the only minor surgery is the one you or your child isn’t having. So in response to that, here is a letter I wrote to my son:

Dearest Son,

I have looked everywhere and I cannot find my magic wand. I’m pretty sure I lost it on the car trip down to Florida to pick up your sister. So I had to leave a message for the surgery scheduler because I missed her call this morning and am waiting for her to call me back. She’s the one who came in last time and gave you a hug because she’d never met you but has scheduled everything we’ve had to send you back for in the last year.

I just want you to know that every procedure, every surgery, everything you’ve ever had to have done that has caused you pain and grief — even though it’s done for your own good, to save your life sometimes — breaks my heart and your daddy’s heart. I just show it more on the outside sometimes than he does.

Yesterday when the ENT came in and put his scope on, and you started signing “All done” and “Ready to go,” and the silent tears started coming because you realized we weren’t leaving — that I was not only going stay but hold you down — it was all I could do not to pick you up and run out the door with you and your sister. That’s why I was crying while I held you down. We have to do this. We do what we do for you because we have to. Trust me, it’s not because we want to.

And it’s not because we don’t love you the way you are. We do. We’ve loved you every way you’ve been. But if we said no to all the surgeries, you wouldn’t be where you are right now. Sitting, watching “Bubble Guppies” and eating crackers and yogurt. You wouldn’t be with us. You wouldn’t be lighting up the world around you with the joy and the happiness you bring to everyone. You wouldn’t be the little brother to your sister, and we would all miss you.

I don’t ever want you to think you have to change what you look like and who you are for anyone but yourself and the betterment of your health. Because we love you the way you are. We love that you talk with your hands, and we love that you swing your arms when you walk because it helps you keep your balance better. We love every bit of you.

Love,
Mommy

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Family of Girl With Rare Disorder Adopts Her a Sister With the Same Condition

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Thom and Tami Wetmore, from Tyler, Texas, credit their daughter Juliana with opening their hearts to their other children who they’ve adopted from all over the world.

Juliana, 12, was born with a severe case of Treacher Collins syndromeshe is deaf and missing 40 percent of the bones in her face, according to USA Today. She has already endured 45 surgeries on her face.

 

Because of Juliana, the Wetmore family decided to adopt a little girl, who also has Treacher-Collins, from an orphanage in the Ukraine. When they met Danica and took her home with them, they were the only people to have ever expressed interest in the 6-year-old girl. It is likely that had they not adopted her, she would have eventually been turned out of the orphanage to live on the streets.

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Now, Danica and Juliana are sisters living with the same condition and their family keeps growing — the Wetmores also adopted three siblings who were in need of a home.

It’s just amazing how your daughter that you look at as just a normal, everyday child that looks a little bit different has changed so many lives,” Thom Wetmore told USA Today. “Because you realize it’s OK to be who you are.”

Get more on the story of the Wetmore family in the video below:

h/t Reddit Uplifting New

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Child With Rare Facial Condition Gets Special Visit From His Hero

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When being different is hard, knowing there is someone else out there like you can give you strength.

Jono Lancaster, 30, of West Yorkshire, England, was born with a genetic facial condition called Treacher Collins syndrome. The syndrome is believed to be caused by a change in a gene that affects facial development, according to the National Craniofacial Association. The condition is often characterized by face abnormalities including the underdevelopment or absence of cheekbones and a slanting lower jaw.

Just 36 hours after he was born, Lancaster’s biological parents made an adoption plan for him, BBC reported. In his youth, he underwent years of struggling to accept his appearance and coping with bullying, but he’s since become a part-time model and learned to love himself. Now, he wants to help others to do the same.

What really frustrates me and upsets me is when a child in a supermarket stares [at me] and his or her mother tells them off,” Lancaster told the BBC. “I wish they could come and talk to me so that I could tell them about it, so that it seems more normal.”

Recently, Lancaster went on a three-week tour of Australia where he visited schools and educated the public about his rare disorder, the Advertiser, an Australian news outlet, reported.

On November 17, he made a special stop on his tour — he visited the Walton family in Adelaide, Australia. Zackary Walton, 2, also has Treacher Collins syndrome, and Lancaster is his hero.

“Today and over the next couple of days I get to hang out with this little dude and his amazing family in beautiful Adelaide,” Lancaster posted on Facebook.

Sarah Walton, Zackary’s mother, contacted Lancaster on Facebook and told him how her son looks up to him. They arranged for the two to meet.

I would have loved to have met somebody like myself when I was younger,” Lancaster told The Advertiser. “Somebody who had got a job, got a partner and said to me ‘these are the things you can do, you can achieve.’”

“He is a celebrity to us — he’s a huge inspiration,” Sarah Walton told The Advertiser.

h/t Aplus.com

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A Letter to My Little Sister With Asperger Syndrome

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Dear Michaela,

It’s hard to believe the picture I used with this letter was taken 16 years ago. It’s even harder to believe how much my love for you has grown and developed in those years.

For most of our younger years, I didn’t like you. I didn’t understand why you needed more attention than me or why you would get angry and scream or throw things. Our mom tried to explain these things to me, and I remember her getting me books about Asperger syndrome. But it wasn’t until I was around 12 that I learned what a gift you were to me.

You were 9, and we lived in our great grandmother’s house with Mom. Life was great at home, but both of us hated school. We were both ridiculed and picked on. You were called a “retard” a lot, and I remember when you told me that, I wanted to bash a few people’s faces in. That year, I was hospitalized to get treatment for self-harm. One day, you came to visit me, and you told me you wanted me back home and you missed me. I fought to get better, and left three days later.

I haven’t attempted self-harm since.

In 2009, when I was 14, and you were 11, we moved to Massachusetts with our mom and our soon-to-be stepdad. You started to blossom. Throughout your elementary school years, you didn’t mention friends, but here, you constantly had friends over and talked about them a lot. In my high school, we had a program to mentor the students in the school.

I got in because I wrote my essay about you.

You went into high school my senior year, and though I was hoping you would attend the same high school as me (for selfish reasons, I just wanted to protect you), you found an agricultural school in the area. You applied, you interviewed, and you got in.

Since you began attending this school, I’ve seen a complete change in you. You’re happier, and you always have something you learned in school to share with me. You joined the Future Farmers of America, and you’re dedicated to it — you were even elected as an officer this year.

I look back on the dark time in my life, and I realize you were my beacon of light. I followed you, and I got out. I’m glad I didn’t end my life.

You inspire me in so many ways. It’s still strange to remember that you never liked hugs or even to shake hands, but you hug relatives and shake hands with strangers now. You hug me when I’m sad, and that’s the greatest gift of all.

You are the greatest gift of all.

Thank you, for being my little sister, and for helping me see the light when I couldn’t find it on my own,

Your Big Sister

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